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Elena Kuzin : Initiation


Today, March 21, is World Down Syndrome Day. Elena Kuzin sent us one of the most touching emails we have received. It was accompanied by this text and these images!

The Initiation project was born from a conversation with Sofia, my eldest daughter who has Down syndrome. When she was 16, she asked me to tell her about her birth.

Together, we reconstructed her birth and the first year of her life.

In order to relive this initiatory journey, we decided to reverse our roles. I openly told Sofia how I experienced the announcement of her disability and she became the lost young mother that I was at the time. At the same time, I took her place as a baby different from the others by replaying my own memories of her.

Down Syndrome may be the most widespread genetic anomaly in the world, affecting one in 700 pregnancies, but the birth of these children is becoming increasingly rare in France. In fact, 96% of women who discover Down syndrome during pregnancy abort. One in ten newborns with Down syndrome are still abandoned at birth.

When Sofia was born, I was 24 years old and knew nothing about Down syndrome. Experienced obstetricians saw her disability in the delivery room and, a few days after her birth, a blood test confirmed it. In the maternity ward, no one could tell me how to live after such an announcement. Instead, I was advised to abandon my child, telling me that no one would judge me.

I asked the geneticist  to explain the particularities of babies with Down syndrome, he told me that, overall, we could live as expected during Sofia’s first year. He then added that these babies were often constipated and that a small stool in the bathroom could help later. This man must have said many other things but I heard nothing more: the word “stool” which played in my head like a scratched CD. For lack of anything better, my mind clung to this object like a lifeline.

The Initiation project aims to support parents who discover Down syndrome in their baby, already born or to be born. Sofia and I are throwing our message of love like a bottle in the sea, hoping that our story will help someone through this ordeal.

I also hope that Initiation will contribute to change the way we view people with Down syndrome. The great empathy, incredible kindness and unwavering vitality of people with Down syndrome leave an impression on everyone around them. I am convinced that we have a lot to learn from them and that our society must finally become truly more inclusive.

Elena Kuzin


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